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April 23, 2013

From the Motor City to Lupus Awareness Month

by Mary Crimmings, VP of Marketing & Communications

I’m able to get home to Michigan to see my family 2 times per year, usually around the holidays. When we connect in person it is time to relax, have fun and catch up on each other’s lives. During each visit my family learns a bit more about lupus as they ask me about my job and what I’m working on. But during my visit home earlier this month, the lupus stories and facts they’ve heard from me came alive when my family visited the purple lupus awareness bus. While on the bus it was the videos of personal stories from people living with lupus that touched their hearts and provided a true emotional connection to the disease. Their visit demonstrated that even those who have some awareness of lupus can gain better understand of this disease.

As you might have guessed, the reason for my visit home was not to see my family (although that was a bonus, especially meeting my new niece), I was in the Motor City for the Detroit stop on the Lupus Foundation of America’s Help Us Solve the Cruel Mystery™ National Tour. I was so pleased that Detroit was selected to be one of the cities selected for the first phase of this tour. And then after spending three days talking to metro Detroiters at the bus and the education program, I was filled with enormous pride for my organization and the teams who have worked so hard to make this program a reality.

Everyone I talked to mentioned how much they learned (including my dear friends who came out in the rain and snow to visit the bus). However, I continued to be struck by the many people we met at the bus who have a personal connection to lupus but, as our research revealed, really don’t know much about lupus beyond the name. And I was heart-broken to hear too many stories from people who lost a loved one to this cruel disease.

The weekend was affirmation of our work and that we must continue to connect to people with lupus and provide them with the latest information on the disease, and we must continue our efforts to gain better public understand of lupus. It is with greater awareness and public support of this disease that we will be able to secure more funding for lupus research.

My trip home to Detroit has given me renewed energy to continue the fight on behalf of the millions of people affected by lupus. And I’m excited about the many activities and opportunities we ALL have in the coming months through Lupus Awareness Month and the National Lupus Advocacy Summit to secure greater awareness and understanding of lupus – the cruel mystery.

Those who have a connection to lupus hold the power to make the greatest impact for others to understand this disease through personal stories of how lupus has affected their life! So as we look though our closets to wear purple (the color for lupus awareness) during Lupus Awareness Month, let’s not forget to also start the conversation about lupus. Asking someone a simple question such as, Have you ever heard of lupus? or Do you know someone with lupus?, opens the door to share a fact or story about the disease, invite someone to sign the petition to Congress asking for more lupus research, and engage others to join the fight against this cruel and mysterious disease.

I’m working on my own personal lupus awareness month outreach plan – how about you?

3 comments:

I've been dealing and surviving with lupus for 7 years now. My kidney's have failed 3 times but I didn't take the easy way out and do as the doctor's suggested after fighting for almost 4 years and 3 kidney failures, I survived. But living with lupus in Michigan is a VERY big challenge and I'm DEFINITELY up for it! I've had 13 doctor's on my case and had to sacrifice my ability to have children to conquer this disease and LIVE. But I did it, and now I'm eating healthy, living healthy and thanking God EVERY DAY for each and every single blessing He gives me! My case was so rare that 13 different doctor's were studying it in my small community. I was recommended to go to U of M because of how rare my complications were, but I stayed with my doctor. He saved my life in 1 night and then again, 2 more times after that. I'm living on my own now and thinking about getting a dog. Animals can play a HUGE role in getting well and STAYING well. I DID notice that there IS NOT a chapter of the LFA in Michigan and I wanted to start one. I KNOW I have TONS of support and I just need a starting point. If anyone has any idea's on where I SHOULD start, that would be great! Please find me on facebook or email me at: Meg741107@gmail.com Thank You!Sincerely, Meghan Moore

I am age 74, have had autoimmune pancreatitis twice, hashimotos thyroiditis, and several probable autoimmune-related problems like: vasculitis twice, gastritis constantly, secondary Addisons disease, gout, severe degenerative spinal disc disease, and many other medical issues like cancer....and am struggling to try to just keep on living...and have had a positive ANA...as well as depression, and both I and my doctor canNOT even find a Rheumatologist willing to take me as a new patient.

There's only one left in this county who inhereted all the patients of the other two that retired recently, and he won't take me.... and it seems like neither will the others in surrounding counties ...sigh...I cannot drive far due to my somewhat delicate condition...what can I do to get the treatment I need from a real specialist?????, when my regular doc has been trying to help me the best he can...we are pretty sure I have multiple autoimmune disorders as well as Lupus, but need a real dedicated specialist to "chart a course" for me to follow.!!!!

The hydrocortisone I need multiple times a day for my Addisons disease is probably the only thing keeping me alive, as my current higher doses of hydrocortisone is similar to the prednisone that Lupus patients take for Lupus when it flares......but the need for increased doses to maintain equilibrium and avoid adrenal crisis has increased over the last 2 years to the point I am very concerned. IS THERE ANYONE OUT THERE TO HELP ME FIGURE OUT WHAT TO DO???

Perhaps they wont take me because medicare is my primary health insurance, and Blue Shield of CA. is my secondary... and seems all doctors won't accept any new medicare patients presently???

I am age 74, have had autoimmune pancreatitis twice, hashimotos thyroiditis, and several probable autoimmune-related problems like: vasculitis twice, gastritis constantly, secondary Addisons disease, gout, severe degenerative spinal disc disease, and many other medical issues like cancer....and am struggling to try to just keep on living...and have had a positive ANA...as well as depression, and both I and my doctor canNOT even find a Rheumatologist willing to take me as a new patient.

There's only one left in this county who inhereted all the patients of the other two that retired recently, and he won't take me.... and it seems like neither will the others in surrounding counties ...sigh...I cannot drive far due to my somewhat delicate condition...what can I do to get the treatment I need from a real specialist?????, when my regular doc has been trying to help me the best he can...we are pretty sure I have multiple autoimmune disorders as well as Lupus, but need a real dedicated specialist to "chart a course" for me to follow.!!!!

The hydrocortisone I need multiple times a day for my Addisons disease is probably the only thing keeping me alive, as my current higher doses of hydrocortisone is similar to the prednisone that Lupus patients take for Lupus when it flares......but the need for increased doses to maintain equilibrium and avoid adrenal crisis has increased over the last 2 years to the point I am very concerned. IS THERE ANYONE OUT THERE TO HELP ME FIGURE OUT WHAT TO DO???

Perhaps they wont take me because medicare is my primary health insurance, and Blue Shield of CA. is my secondary... and seems all doctors won't accept any new medicare patients presently???

Lupus Foundation of America

The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Have questions? Email us at yan@lupus.org